Wednesday, January 03, 2007

no new year cheer, either

Our Denver trip was prematurely shortened by blizzards. The good is that my grandmother still knows me.The bad is that she does not know my cousins, who were also there, and that she is losing the ability to differentiate between her sons. More than once she pulled me down to wheelchair-level to ask me in whispers -- those agonizingly loud whispers of someone who has become quite hard of hearing but refuses to wear aids -- who those children belong to, which boy is visiting now? But she knows me. I think -- I like to think, I must think -- that she will know me until the end, that I may be the one person she does not forget. She knows me, but there is so much bad that it's hard to remember what a gift this is.


Wondering: at what point does a dabbling piece of writing become a book?


mrschili said...

I have never known anyone who suffers from Alzheimer's or dementia, so I can't really offer any insight other than to say that I suppose, at a certain point, the relationship becomes more about giving love and attention than receiving it. Much like I know about the relationship with an infant, I would imagine that life with an Alzheimer's patient is very one-way, but that doesn't necessarily make it bad.

Love her for all your worth and know that no good energy is EVER wasted. She may not be aware of WHO is offering her kindness, but she will be aware of its presence. Isn't that what really matters, anyway?

feather said...

I don't think my grandmother is any less loving, or any less capable of returning affection and kindness and adoration, despite her dwindling ability to recognize her family. You're correct in sensing that any energy I give to her is not wasted: she recognizes it, and responds. My grandmother is, and always has been, and extraordinarily generous and loving person. It's part of her core self; part of her soul, perhaps. I do not know if this would be true for everyone -- I know that some Alzheimer's sufferers are angry, even violent, in their confusion and mental isolation, but my grandmother has only once behaved in this way, and that was when she was under extreme stress from being physically ill as well.

The anxiety over her loss of recognition is entirely mine. I am closer to her than any of her other grandchildren; I could be her daughter, she often told me that I was like a daughter to her. I sometimes feel as if we are actually the same person in two bodies; we understand each other that deeply. I feel as if her continued remembrance of me would affirm this connection I have always felt to her. I want to always be special to her for who I am and what we share, and the thought of losing this makes me more wild with grief than if she were simply dead.

The thing about Alzheimer's is that, as the memories are stripped away, in some cases, there is a window of time before complete degeneration in which the essential being of a person is clear and vibrant and undisguised. They become like children are before memory and experience begin to shape them into a creature of circumstance. Take away the scaffolding of memory and what is left is the pure force of being. I want to believe that my relationship with her goes deep enough to be a piece of this core self.

Of course, this is only true until the disease progresses to the point in which the mind is more holes than matter -- or whatever the current visual metaphor for Alzheimer's is. The truth of the disease is that no one knows why it occurs or how to stop it. There is not even a fixed trajectory of the path it will take or how quickly it will progress. The only thing doctors can offer is the truth: it will be brutally heartbreaking, with all of the prolonged grieving of a cancer without even a loose medical roadmap to tell which route the disease will take to arrive at the end result. What people forget to say is that there is still goodness and beauty and delight.

We have been lucky, really, and I don't mean to complain. We have been very lucky.

mrschili said...

I don't think you ARE complaining, Feather, and even if you were, you have a right to. This is never an easy thing, and for more than the reasons you outlined. I've heard it said that the people who suffer most from Alzheimer's are the ones who love the patient, and you're bearing that out.

Your expressions here have been eloquent and revealing. For as difficult as it must be for you, I am grateful that you're willing to share the experience here.